It’s been quite a while since I last posted, so I thought I’d give an update for anyone who is interested. Hopefully, I can remember everything that’s happened - if not, I’ll post additions later on. First off, my brother was diagnosed - the genetics are obviously a factor in our family (BRAC2), so now the wider family is having to be tested etc. Fortunately for my brother, it was caught early (he was having regular tests because of my situation), and it looks like removal has done the trick. Fingers crossed.
As far as I’m concerned, the operation pushed the PSA down to negligible levels and kept it there for around 10 months. After that, it started rising again - not to a particularly high level, but the doubling rate was pretty short. An MRI suggested the increase was entirely related to activity in T6 - the vertebra directly above where some of my spine was removed. Long story short, I had cyberknife on that area in early June, and fully expected that to do the trick. It didn’t, my PSA is up again, and a further MRI showed it had had no effect on the vetebra. Other hot spots have also emerged. Apparently, the PARP inhibitor that I trialled (Olaparib) makes radiotherapy less effective.
So, I am now faced with limited choices. More chemo (cabazetaxel) and/or an immunotherapy trial have been suggested at the Marsden. Further operations have been discouraged as there are a number of active spots and I’m still not fully recovered from my last procedure (largely because of the removal of nerves that has affected my stomach wall, breathing etc).
I spoke to the spinal surgeon ahead of the cyber knife and he told me that trying to kill the mets with heat wasn’t a runner as death of the entire tumour, rather than just the edges, cannot be guaranteed (slightly different from what he said last time). He can take out T6 if that’s needed, but we are not there yet.
I’m thinking about all the possible options - radium 223 seems like a good initial option, while an internet search throws up PSMA guided radioisotopes, checkpoint inhibitors, other PARPS, big shots of testosterone etc. I’d forgotten how tough it is trying to become an oncologist over the course of a few days! I’m also in discussions with my doctors in the US about what to do next. If anyone has any suggestions, or experience of the above/other treatments, please feel free to let me know.
To end on a good note, I rode a bike for the first time in three years a few weeks ago. A glorious sunny day with my friend in Exeter. What a fantastic feeling. I plan to do a lot more of that.
D